Evolving Patient-Researcher Collaboration: An Illustrative Case Study of a Patient-Led Knowledge Translation Event

[A Former User]

The first research project I was ever involved in, in 2013. In print 4 years later.

Evolving Patient-Researcher Collaboration: An Illustrative Case Study of a Patient-Led Knowledge Translation Event

http://bit.ly/2fjzq69

I'm the AM in Toronto. : )

[A Former User]

Hey Annette, nice to see work that you've supported see the light of day! That it took four years to get into print seems typical. Shocking, actually.

And once out in public, there's such a vast number of journals, I wonder who ends up reading all that's published? The proxies of # of downloads on some journal websites indicates pretty meager attention to quite a few articles that draw my attention.

That's the true "knowledge translation" step, I think: learning who's done what and benefitting from that experience. In this particular article, it's a pity that there isn't a final paragraph with the heading Lessons Learned: summing up what went well and opportunities for improvement. It would be especially interesting to see the range of contrasting observations from researchers and patient organizers.

As it is, I'm at a loss to figure out what the author believes others could productively take away from the project. This "Illustrative Case Study" would really benefit from a structured evaluation, by the participants and by someone more dispassionate.

How do you feel about seeing the project reported and its possible influence on others? Do you think the other patient participants learned some lessons? Can you recommend some Lessons Learned from your experience to PAN members?

Thanks for provoking my thoughts! That's a positive impact, for sure.

Best regards, Carolyn